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Thursday, September 1, 2011

I write book reviews for my personal blog, and I recently received a wonderful book written by the father of autistic child. (Actually, he is no longer a "child", but during the time detailed in the book, he is.) I wanted to share it with you here. If you're reading this blog, there's a good chance you've already decided that there may be more solutions out there. This book is about a family who made extreme sacrifices to get their son the treatment he needed.

From the back coverNobody knew what hurt little Joseph. Perhaps some toxin had invaded his mother's body before his birth. Perhaps it was the difficult birth itself. Or maybe the origin of his disabilities was genetic. Whatever the cause, something had gone terribly wrong — but no one was offering solutions or reasonable guidance.

He cried most of the time, and thrashed about as if in great pain. He wasn't learning how to crawl, talk, or interact normally. His parents sought medical help and were told at first not to worry so much. Later, the professionals recommended counseling to help the parents accept reality. Nothing could help their son, and the quality of their own lives was at risk.

Refusal to accept that advice launched an improbable journey that changed their lives forever.

My reviewI expected this book to make me cry. I did not expect it to make me mad. As I read about the Gallup's struggle to find answers for their son, I was so disgusted by the mainstream medical world's refusal to, at first, acknowledge anything was wrong, then later, to acknowledge that someone somewhere might know something they didn't. This is a book about being your child's advocate. It's about pushing past all the "experts" who are basically telling you, "We don't have the answers, so you're not allowed to have questions." It's about parents who were so desperate to help their son that they humbled themselves and asked for help from people they didn't even know. It is not about Super-Parents. Steve is very transparent about just how human they are.

One thing that Steve and I agree on is that every child should be allowed to reach his full potential. He mentions one father who told him that if he had to choose between his child being low-functioning but full of the understanding that she was loved completely, or a “normal” child who didn’t feel loved, he’d choose the low-functioning. Steve (and I) wondered why the two were mutually exclusive. We’re not talking about making a child feel like he is less of a person or that he is damaged goods. We’re just talking about making the effort to do what we can to help our children function at as high a level as they are capable of.

I found it interesting that back in 1989, the program that the Gallups used to help Joseph reach his full potential used some of the same methods I’ve seen in “alternative” programs in use today. Alternative programs that are working. As Steve says, “We’d seen enough to know that the answer for one kid may be unrelated to what works for another, that very seldom is any answer complete, and that there’s no escape from guesswork. The only feature the various success stories shared was a willingness of each family to reject experts who would not help.” I did cry three times while reading the book. The first time was reading about all the amazing volunteers who had stepped up to help with Joseph's program, almost all of whom were complete strangers at the time. The second was when an Institutes staff member told the Gallups that the whole staff went out for ice cream to celebrate when they got the call telling them that Joseph was walking. At that meeting, the staff member also told them, "Joseph deserves to be told how great he is." (I'm quite sure Joseph was getting message loud and clear from his parents.) I also cried at the end of the book, but you'll have to read it to see why.

This is the story of an amazing family. Parents who were willing to make great sacrifices for their son, and a son who was strong enough to do what the “experts” said he couldn’t do. I won’t say it’s an easy read because there is some emotion involved, but it’s well-paced and well-written. I highly recommend this book to everyone, especially parents.

About this bookTitle: What About the Boy?: A Father's Pledge to His Disabled Son
Author: Stephen GallupPublisher: Lestrygonian Books
Release date: Sept 1, 2011
Pages: 376
Where I got the book: I got this book for free from the author in exchange for a review